All posts by richardlaneuk

Maxine is a Scope sleep practitioner. She helps families figure out and practice sleep patterns that work for them. She talks about her experiences raising her disabled son George, who has congenital ataxia. She’s sharing her story as part of the 100 days, 100 stories campaign.

Thanks to Scope I’ve been able to get back to work and find the support I need to look after my disabled son George. It’s been difficult at times but I’m optimistic for the future.

We knew from when George was young that he wasn’t quite right. I’ve got six daughters and George was my first baby boy, so I thought he was just different to his sisters because he was a boy.

Once he got a little bit older things became a bit more apparent. We noticed that George couldn’t hold his own head, his head was wobbly and kept falling down to his chest and he didn’t open his left eye.

As a mum you know there’s something, you just don’t know what.

Once we went to the doctors things started happening quite quickly. We were referred to a pediatrician who told us at first that he had something called opsoclonus myoclonus which was curable. He told me that we had a chance of having a ‘normal’ little boy.

I came out with mixed feelings because I’d had George a year by this point. He couldn’t do much apart from lie down but he was my little boy. He was our George. I thought I could have this normal little boy but then I got upset because I thought I’d lose the little boy I’ve already got. It was really emotional. Like all mums I wanted a ‘normal’ boy but I didn’t want to lose this wonderful little personality that I’ve got already.

We later found out that they’d made a mistake with his diagnosis. A specialist we saw a bit later told us that his condition wasn’t curable and that they didn’t think he’d ever walk or talk.

Family reactions

We told George’s sisters who were all absolutely fine. They were so fine that I was worried they didn’t understand the situation! I had to sit one of his sisters down because she said that there’s nothing wrong with George. I asked her if she understood that her brother is disabled. She said: “Yes, why did you ask? I mean that there’s nothing wrong with him in my eyes”.

We celebrate

When we heard that he wouldn’t walk or talk our motto became – never say never. We weren’t in denial but we wanted to make his life as good as we can and push him as much as we can. And we do push him. We push him now and now he’s walking! We thank his school for that. We did a lot of work with him but there was one particular lady at the school who was determined he was going to walk. She walked him every day using a walking frame and after that the only way he would walk was holding on to you. He didn’t have the confidence to let go.

Then one day at home, when he was in the lounge, he was clinging on to some furniture. I turned my back and then when I looked back he had walked across the lounge and stopped at the door. He then turned around, looked at me and went “haha!”. It was just a sound that came out but it was almost as if he knew what he’d done! At that point his dad pulled into the drive. His dad came in and he walked up to his dad. I don’t think I’ve cried so much in my whole life!

He was 7 years old. We celebrate things, but we celebrate them a lot later. Everything he does is a celebration.

It’s been hard

There was a time not too long ago when my husband was working away all week. That was hard at the time. George screams a lot and there have been times when this has pushed me to the end of my tether. I’ve been at breaking point before and phoned our social worker to beg for help. She just kept telling me that I was doing a great job and that everything was going to be fine. It just felt like nobody was listening to me.

I lost my temper once and told her that I can’t do this anymore. I need help. She turned around again to say I was doing a great job. I must admit at this point my language wasn’t the best and I said to her – you’re not living my life don’t tell me I’m doing a fantastic job when you’re not here. I’m not doing a fantastic job, I’m not coping, I need some help. At which point I hung up.

The thing that impacted us most was him not sleeping. He didn’t sleep. He got up at 3am every morning which was when my day would have to start.

Getting back to work

The reason I work is because of Scope. When I had George, I used to go to a group, a little singing group for other mums with disabled children.

There was a portage worker there, and one day she gave me a leaflet and said I should volunteer to become a Face to Face worker where you befriend other people in similar situations. She said you’d be really good at it because I’m supportive.

I got a lot out of being a befriender. It was really nice to go out and support other mums. I think I coped well with George’s diagnosis because I was a bit older. I thought how must it be for younger mums having a child with a disability. I’d already had 5 children.

Not long after this I trained to be a sleep practitioner. When I was doing the training George decided to start getting up at 3am in the morning. I didn’t know how bad sleep deprivation could be until George started getting up at 3am. Then I thought come on you can put this right, you’ve done the training, put it into practice. He was my first case! So I put a programme into place and within two and a half weeks he was sleeping. It really helped me have a really good understanding of a sleep problem.

In 2010 we got the funding to run the service as a proper paid for service and that’s when I went on to the payroll with Scope. It was nice to be working.

At the end of the day it’s really difficult being the parent of a child, any child, let alone a disabled child. It was really tough. But I’m now doing a job that I really love and I wouldn’t be doing it I hadn’t have had George, I thank him for that.

Like this:

Anthony talks about how Scope supported him toward his ambition of working to support disabled people. He shares his story as part of our 100 days, 100 stories campaign.

My passion

When I was five years old I met a young boy at school who was severely disabled. He didn’t walk, talk and couldn’t sit up. It made me feel sad that he couldn’t get involved and play with all the other children. He used to lie on the floor and I wanted to lie down beside him. I went home one day crying because I worried about him. My mum asked what was wrong. I told her I was sad about my school friend. Ever since the first day I met my school friend I have wanted to help severely disabled people.

At my secondary school, there was a boy with a profound speech impairment. Teachers used to call me to help interpret. The teachers all said how good I was at helping others. When I got a little older I met my best mate who also had a speech impairment. I’ve known him now for nearly forty years and I have been his voice many times.

My passion is to help severely disabled people. This is why advocacy is very important to me. Too many times, I’ve seen people without a voice left in a corner and forgotten about. It is people like this that need advocates. This is why I am doing my advocacy course, to help give other people the chance they deserve.

What has been the greatest hurdle you had to overcome?

The greatest hurdle is to tell people what I really want; to get people to believe me. They say to me how can you do it when you need so much support? You are disabled yourself, how can you help other people? But I can help people exactly because I am disabled and I know what it feels like. I feel their frustrations and understand their difficulties.

The breakthrough came when I came to Scope. Scope saw my talents in helping people. Then I met my fiancée at Scope and another lady at my service who needed support. This made me more determined to help people.

Qualifications

I was at home one day when an assessor for one of the staff members came in and I had an idea. I asked her if I could do a course in advocacy. She searched for me and said I could do a unit on Advocacy or an NVQ2 in Health and Social Care and choose units in Advocacy.

The assessor was almost sure that the college would provide funding. Unfortunately she came back and said the college would only provide funding for someone who is employed for at least 30 hours a week and will continue to work after the training. Sadly my volunteering did not count.

So my key worker and team coordinator began to look for funding. One of the people they contacted was my care manager at Richmond Council. We had a couple of meetings with my care manager from Richmond Council. They presented my case several times and all the evidence they had gathered about my volunteering and the work I have done to improve outcomes for disabled people.

Richmond Council eventually agreed to pay for the training. It means I am on my way to achieving my lifetime goal; to help give disabled people the voice they never had.

I want to say a big thank you to my mum, my family for believing in me, to my local authority and Scope for giving me this opportunity, supporting me and believing that I can do it.

Emma Satyamurti has this week been made a partner at the law firm Leigh Day. She tells her story about why she pursued a career in a law and being one of too few disabled role models in the legal sector. She shares her story as part of our 100 days, 100 stories campaign.

I decided to become a lawyer because I wanted to do work that would be interesting and intellectually challenging, but which would contribute, in however small a way, to making the world a better place.

It was a leap of faith, my background had nothing to do with the law. I had studied Classics at university and had never been anywhere near a legal textbook.

I was lucky enough to get a couple of work placements with law firms, and a place at law school where I obtained the qualifications I needed to become a solicitor. But I was still undecided about what kind of law I should go for.

During my training contract, which is the two year period of ‘on the job’ training you have to do before you can qualify as a solicitor, I spent six months in an employment department, I realised then that this was the area of law I wanted to specialise in when I qualified.

I saw at firsthand how important work, and feeling valued at work, is to people’s well-being and self-esteem, and how damaging it can be when things go wrong.

I have been an employment lawyer for over 10 years now, acting almost exclusively for employees.

I have been able to help clients facing a wide range of issues and problems including being sacked unfairly, suffering bullying from line managers, and being treated badly for blowing the whistle.

Over the years, I have seen how one particular form of mistreatment can have an especially devastating impact – discrimination.

There is something about being singled out for negative treatment because of some aspect of who you are, such as your race or your gender, that can cut to the heart of a person’s equilibrium and sense of self.

As a disabled person myself, I understand this from a personal, as well as a professional, point of view.

While I have been lucky enough not to experience discrimination directly, I know what it feels like to be ‘different’ and to worry that I am not seen as ‘normal.’

For example, when I meet a client for the first time, I am acutely aware that they are probably not expecting to be greeted by a four-foot tall solicitor with mobility issues.

I have never encountered any kind of adverse reaction, but I am aware of taking a (metaphorical) deep breath before entering the reception area, and of consciously projecting a confident and relaxed persona to put the client at ease.

I never know what the client is actually making of my appearance and whether there is any need to reassure them or not, but this sense of never quite knowing how one is received by others is perhaps one of the complexities of being ‘different’.

While this can feel uncomfortable, I think it is a strength and means that I can draw on more than legal knowledge in my work with clients.

Being happy at work really matters, and I feel very lucky that my own work enables me to help people get closer to that goal.

I have in the last very few days been made a partner at Leigh Day, and I am looking forward very much to the enhanced scope this will bring to further develop that work.

Like this:

Katherine has been involved with the Trendsetters programme since she was 12. It aims to let young disabled people make new friends and learn new skills. Katherine is sharing her story as part of the #100Days100Stories campaign.

I’ve been a Trendsetter since the project was started back when I was just 12 years old. Back then the scheme to help young disabled people was just a pilot programme. I’m now approaching my 18th birthday and I can’t believe that I’m going to be leaving Trendsetters. The prospect makes me really sad!

The project has been a lifesaver

The project has been a lifesaver for me as it’s given me new skills to handle my disability as well as the support from fellow Trendsetters who were both older and younger than me. I’ve loved having the opportunity to work both individually and as part of a bigger group. I know that I wouldn’t be the person I am today without the scheme. I now want to help other people have a similar experience that I had with Trendsetters. It’s so important that young disabled people and their families and friends can get the support they need. I’ve learnt so many things growing up with a disability that could be helpful to others.

Future plans

I’m now in my last year of school. I’ve been in a mainstream school for all of my life and I’m now doing my A-Levels in biology, chemistry and maths. I’ve had cerebral palsy which has been a minor complication for me, as it means that I’m a full time wheelchair user among other things, like not having full hand control. Mostly I have difficulty multi-tasking (shouldn’t every girl be able to multitask!?).

When I’m not studying I’m just like any other teenager, but I especially enjoy creative writing. I’d love to do more writing about some of the issues teenagers face, like bullying, self-image and making people think a bit more about what they have and who their role models are.

I’d love to write more about how disabled people deal with people’s reactions so I can tell other young people that you don’t have to be superman/woman all the time and that at times you will get awkward situations and questions from friends and others. Trendsetters helped give me the confidence to write, speak out and help other disabled people. I can’t wait to put some of the skills I’ve learnt in to practice and to stay involved with Scope’s work!

Like this:

55-year-old Barry got a new lease on life when, with Scope’s support, he moved into his own home. Scope’s Stories Officer Nick Duquemin met Barry and his Support Worker, Judy, at Barry’s home in Hereford.

Judy: Barry will have lived here 15 years this year. I’ve worked for Scope for 16 years – it’ll be 17 years this year. I was a support worker when Barry moved to Hereford. I wasn’t on Barry’s team, but I have known you since you moved to Hereford.

Barry: In 1999.

Judy: Barry has his own tenancy now. It’s a housing association property, so even if we stopped supporting him – even if Scope stopped existing – Barry would still have a home. He would just need to find another care provider.

He’s got security because he’s got a roof over his head, which he wouldn’t have if he were in registered care.

Barry: It [Grangewood] was a big place. Too big. This is smaller. Day-to-day activities.

Barry: Going to the Courtyard.

Judy: You like to go to the Courtyard [a theatre / café nearby], which is really handy for where you live. What do you do on a Saturday, when they’re playing at home?

Barry: Football.

Judy: Hereford United football ground is literally just across the road. Barry likes to go and watch the football, even though they’re not doing very well.

Barry: Yes.

Judy: You’ve got a t-shirt and a scarf – you’re a proper Hereford United supporter. You go to every home game.

Barry: [Unless] I’m on holiday.

Judy: Yes, you missed one because you were on holiday.

Barry: [My holiday was to] Southampton.

Judy: You use Revitalise holiday company. They provide supported holidays, so Barry doesn’t have to take staff with him; he gets supported there. So it’s a true holiday then – he gets to have a break from us and his housemates.

It’s really a holiday if you’re away from everybody. What else do you like to do? You love music. You go to a music workshop. Where did you go this morning?

Barry: Yam Jams [a music/rapping group for disabled people].

Judy: Barry goes to two music groups every week. You go to Yam Jams on a Tuesday and a music workshop on a Wednesday. You do get involved in lots of different things – you do different things with Echo [an organisation which runs activities for disabled people].

You’ve been swimming recently with the learning disability team – the learning disability team [at Hereford Council] have a physio and on a Thursday they organise activities to help with posture. You do trampolining as well with them, don’t you? Rebound therapy, they call it.

Barry: Yes.

Judy: It’s whatever takes your fancy really, isn’t it? Barry’s not really one for set routines, so it is whatever just takes your fancy at the time. You go and see shows at the Courtyard if there’s something on you like. Sometimes it’s just going out for coffee. There’s a lot of flexibility.

Flexibility

Judy: If there’s something you want to see at the Courtyard, you just ring me up or get the staff to ring me up and say, “I want to go and see this on this day”. When I’m writing the rota I can move the one-to-one staffing around to accommodate that.

So it’s Barry who’s in charge – Barry says when he wants the time, which is something he wouldn’t have had when it was residential care.

Changing attitudes

Judy: I think people are more aware and more accepting – they see you every day, don’t they Baz? And I think that’s definitely got to help the general public’s awareness. Seeing individuals rather than seeing people en masse on their weekly trip into town – a convoy of wheelchairs going down the street.

Whereas Barry can go into town whenever he wants to. It’s just him and his support worker and there’s no fuss.

I think it’s a lack of understanding. Sometimes people just don’t know how to cope – they see somebody in a wheelchair and they don’t know how to talk to that person.

I’ve said this often – just because Barry’s got a set of wheels doesn’t mean his ears don’t work, but people suddenly talk louder and slower. That’s better when people get to know you, but you still see it sometimes.